Luchistaia kolbasa i skumbriia. M. Larionov (1912). (cc)

What a way to make a living | A personal assistant in social care

What a way to make a living is a series, in which people in different working-class jobs tell us about their working lives, how they feel about their work, what struggles they face at work, how (and if) they have tried to overcome them. In this instalment, Hanna Gál interviews Mariam M on working as a personal assistant in social care.

HG: Where did you work and how long for? Was there a particular reason why you left and what was it?

MM: I worked at a London-based organisation that refers to itself as a ‘social enterprise’. It provides personal assistance and supports independent living for people who have disabilities. I was a volunteer personal assistant, meaning I worked there in exchange for a fixed monthly wage (usually between £300 and £360) and accommodation, which was provided by the organisation. This job was supported through the Tier 5 charity worker visa, and I worked there for a year. The organisation requires a commitment of a minimum of six months to be able to sponsor migrants on Tier 5. After that, I worked in Brighton, as a direct employee and personal assistant of service users. I was no longer on Tier 5 as I had then a Tier 4 student visa, then the provision of care was taken over by a Brighton-based organisation that promotes independent living, so we TUPE-d across to the new organisation to continue working with our regular service users. I worked here for 1.5 years. 

What was the job like? What were your daily tasks, perks and frustrations?

MM: My jobs were similar in both cases. It included doing anything to help people live their lives fully and independently. On a basic level, daily tasks included cleaning, cooking, personal care, shopping, administering medication, help with administrative tasks, assistance during outings and appointments, and moving and handling equipment. However, some services users needed additional assistance depending on their individual needs. Daily tasks also included the provision of assistance in creative ways, depending on the hobbies and personal interests of each person. Some of the service users, for example, enjoyed doing DIY projects, writing, planning themed dinner nights etc. The main perk of the job, for me, was the ability to foster trust with each client and contribute to creating a healthy environment of independence. I enjoyed building a relationship of trust and respect, helping people discover the flavours of the Maghreb through food or music, and supporting them in whatever way they wanted or needed. I especially enjoyed working in Brighton because the workforce was smaller. We all knew each other (speaking here only in terms of the care workers working with the service users I worked with), there was, therefore, a stronger sense of solidarity within the workplace. This was also a different work situation because my visa was not dependent or tied up to my work in the same sense. I could leave and find another job, although that was difficult and I didn’t leave until my student visa ran out, for financial reasons of worrying of not being able to support myself in a context where migrants have no access to public funds. The frustrations are many, mostly to do with lack of support, on issues of racism, bullying in the workplace, health and safety issues, and the blurred lines of the personal relationship and the professional relationship in the context of personal assistance, which I will go into more later. 

How big was the workforce, and what were the demographics?

MM: In the London-based organisation where I worked, there was an average of 20-30 volunteer workers during a year working in different parts of the city and with different clients, in addition to paid part-time and full-time workers. The stark majority of the unpaid workers were women, with two exceptions being men. I don’t have a clear idea of the number of people working with them for a variety of reasons, and before I go into this, I’ll need to explain the working conditions. We worked at a flat opposite the service user’s flat, which the organisation is renting. We would stay there on breaks and on night shifts, and we would be called in when needed through an alarm. The most important reason for not being aware of the numbers of the workforce was that we didn’t have supervisory or staff meetings in that sense. Usually, staff meetings would be the organisation director coming to the workplace (the flat they’re renting) and asking us how things were going. This has only happened once during the full year I worked there. All the other meetings we had, at the organisation itself, were for training purposes, whether client-specific, or broader training such as fire, health and safety, and medication administration. During these trainings, there would only be 3-4 volunteers at one time, so we didn’t even have everyone’s contact details or even knew who they were. I think this was also accentuated by our living situation. Volunteers are placed in different houses across London, usually 20-30 minutes away from their workplace, and considering we were getting paid hardly enough to be able to survive and working in different places, it was not always possible for us to meet. In terms of the workforce, it was primarily migrant and/or BME. The entire volunteer workforce was from countries in the Global South, although not all of us were equal in terms of the immigration situation. Some of the volunteers joined through a Tier 5 Youth Mobility visa, which gives the right to work and live in the UK for two years for nationals from specific countries, and in which applicants have to demonstrate that they have £1,890 in savings. This type of visa does not require sponsorship from an organisation or a charity. This means that every volunteer who came with this visa and started working with this organisation, has, for various reasons to do with working conditions, left within a few days or a few weeks, as the job was not tied to a visa sponsorship. This was very different from the Tier 5 Charity Worker visa, for which applicants are also required to demonstrate £945 in savings. However, this requirement is waived if the organisation provides evidence of planning to cover accommodation and basic living expenses for the entire visa duration, which was the case for me.

In the case of my work in Brighton, we were six regular care workers before the TUPE process. We continued to work with the same service users after that but in increased numbers, the regular staff have grown to ten. Half of us were students, all of us were women, and most of us were migrants. 4 out of 10 workers were students, 7 out of 10 were migrants, from different parts of Europe, Africa, and Australia, and 4 out of 10 were BME. In this case, I would also say it was difficult to gauge the number of the workforce beyond our surroundings, primarily because of the workplace being detached from the location of the organisation. This is a big organisation however and operated in areas surrounding Brighton. In addition to the regular personal assistants, we also had staff joining the team regularly from various agencies. These were outsourced workers, on casualised contracts. Staff from agencies did not have person-specific training, which, funnily and tragically enough, is one of the main tenets of independent living. So they were at the end of victimisation from project managers, team leaders, and service users. They were often portrayed as people ‘who are slow’ or ‘make money but don’t work hard enough’ – albeit their wages being a fraction of what the agencies charge per hour, which was at least £35 an hour, £50 an hour on short notice. In this sense, agency staff are stuck between exploitative contracts and working conditions, and service users who would feel frustrated and unsettled at having various people coming in and out of their home, without knowing what their needs are or being familiar with them or their lifestyle. In this case, it was harder for outsourced agency workers to build trust that is necessary for this type of work. 

What conditions did you face while working in the job?

MM: At the organisation where I was an unpaid volunteer worker, bullying, racism, classism, and shouting was an almost every day occurrence, in addition to unsafe practices when it comes to moving and handling equipment. Almost every day, I was at the receiving end of comments about immigrants being lazy, immigrants sponging off of the state, immigrants coming to this country and thinking care work is about serving a cup of tea, and this was on a good day. This was not only done with me but all colleagues. Our colleagues from Eastern European countries were subject to anti-immigrant sentiment, the volunteers, however, particularly for those of us from African countries, were subject to anti-immigrant sentiment and virulent racism. What was interesting for me, in addition to this, is how these power dynamics have seeped into the service user’s family life and social life outside of their home. Often family members felt emboldened to behave in the same manner with us. We were often verbally abused and shouted at within and outside the home. In several cases, people working in places we visited for services, would have lengthy equally racist conversations with the service user. It was a degrading situation, and the ramifications on my mental health long-term are still something I grapple with every day.

This was also difficult because the shifts for volunteers were long and rotational. One week we would have 48 hours off, do a shift of 48 hours, and then have 72 hours off. The next week it would be the opposite, a shift of 48 hours, 48 hours off, and then another shift of 72 hours.

We initially tried to resist issues of racism and bullying in the workplace and brought it up very early to the director of the organisation, myself and another volunteer, to which their response was using a gendered slur against the service user, telling us that we’re doing very well and to put up with it. There was no attempt whatsoever to address any of our concerns. I was very shocked at this response because the main reason why I joined this organisation was due to their philosophy of independent living – how can independent living be fostered in a work environment where service users are slurred and workers constantly robbed of rights and dignity?

Another major problem with working conditions was linked to the notion of personal assistance, which was often instrumentalised against us and against service users. On paper, independent living was care workers assisting service users go about their life and achieve what they want to, without prejudice. However, in practice, this gave the organisations a lot of room to avoid accountability on the grounds that our jobs include doing whatever the service user wants. For example, a recurring problem that we have faced at my workplace in London and Brighton was linked to moving and handling equipment. Several people have incurred back injuries and were swiftly dismissed and the response to that was that they were exaggerating. When we brought this up with the organisation, it was addressed in two ways, either telling us to put up with it and thus, using personal assistance as a stick with which to beat workers, or in situations of power play, attempting to force the service user to change their practices without consulting them for opinion, or attempting to consult their occupational therapist. In these situations, service users were threatened with CQC regulations and care provision being withdrawn. Often, these situations were in violation of basic legal proceedings of situations regarding moving and handling practices, despite claiming to uphold them. This was a very difficult situation to navigate, as it goes against the core of what independent living is about, and robs both service users and care workers of their agency. For the workers, the consequences of power plays of managers were serious, as the concerns and working conditions of care workers are instrumentalised to ‘discipline’ service users who resist, rather than improve the working conditions of care workers whilst defending the agency and dignity of service users. 

What was your relationship with your manager/boss like?

MM: My relationship with managers and bosses was primarily an e-relationship. I hardly saw them, and it was very tense, largely due to the lack of support and the ways our concerns were dismissed and ignored. It is important to note, however, that during the TUPE process at the Brighton workplace, we had several changes of project managers, and had two meetings during that time. On one occasion, the manager themselves was racist to me in front of another colleague and two administration workers, and to my relief and happiness, my colleague had stood up for me and challenged the manager on their racism.

The boss/employee relationship was even more complex when the employer was also the service user. This made advocating for any workplace-related issues or organising a practical impossibility, due to the conflictual feelings of care provision and withdrawing labour from someone who is not only a boss, but also someone who needs support and with whom workers also have a personal relationship, someone who is at the end of discrimination, cuts to funding, and state-sanctioned oppression. Even in cases of being employed by organisations and agencies, the nature of the workplace itself in the field of personal assistance (someone’s private home) and the fact that managers are detached from what happens in the workplace, creates a situation in which the roles of bosses and service users could be interchangeable even when they are not. In one example, we were working with and directly employed by a service user on a zero-hours contract. We all found it impossible to bring up our concerns and advocate for better working conditions as we were familiar with the financial hardships they were facing and thought that would lead to further stress for the service user and tensions between the workers and them. After the TUPE process to the new organisation, we have continued to be employed on a zero-hour contract, despite having collectively raised it as an issue with the organisation; that has only changed a couple of months before I had left the job. 

What was your relationship like with the clients? Do you think the nature of your work, or the conditions of your employment had an impact on it?

MM: The relationship with clients was one of the main reasons I have enjoyed and done this job for a long time, despite all the challenges. I appreciated being trusted with tasks that are often personal, but also the level of patience and understanding it took each service user when I initially joined their team, as someone who was unfamiliar with their environment. However, not all relationships with clients were friendly. In many cases, avoiding conversation was a coping mechanism for staff against racism for example.

Yes, the nature of work and the conditions of employment has, of course, had a significant impact on this relationship. On one level, situations where the relationship between service users and care workers was a mixture of a relationship of work, trust, and friendship (direct employment) has meant that it was difficult for us to advocate for better working conditions without it being perceived or portrayed as a further attack against their independence. This is reflective of the increasingly privatised nature of social care and the managerial reliance on independent living as a means of profit maximisation, rather than a means of support, social inclusion, and access. On another level, being employed as an unpaid volunteer, being a migrant, and being on a Tier 5 charity worker visa has meant that the agency of workers is minimal to non-existent, due to the risk of losing the job and the visa.  It was a sense of operating at the core of the capitalist system whilst simultaneously being on its margins. Many of my co-workers relied on this job to support their child or a family member in their countries of origins. Additionally, our status as volunteers was used against us as we were sometimes reminded that we had willingly joined and enjoyed the perks of ‘free’ accommodation and wages.  

If you had a problem, what was it and how did you try to solve it? Did you work with your colleagues or try to solve it on your own? Why?

MM: I might have addressed this in a previous question, but our problems have ranged from racism, bullying, health and safety in the workplace, entitlement to breaks, and pay-related issues. Some issues we have addressed collectively, however, it was difficult to do so, as a lot of the staff were afraid of losing work due to being employed on a zero-hours contract or being volunteers. Another problem we have faced is the racialised and racist context in which certain duties are carried out in the workplace. For example, doing more physically demanding tasks was left to nationals of countries of Africa or BME British staff with African heritage. Staff of migrant backgrounds were also demeaned for not having ‘good enough’ English. Because of the workplace being separate from the location of management, solutions offered did not necessarily translate well or at all into the workplace. For instance, we could not always take our entitlement to breaks at the right time due to short-staffing and days being very busy, with sometimes unexpected physical, mental health, or everyday issues arising. We could not go on breaks if the people we assist are in need of additional support. Similarly, moving and handling methods that we are taught in training do not always reflect the support that service users need. The discrepancies between training and practice means that a lot of times the blame is shifted unto care workers for not being able to take their break or not protecting their backs. 

Overall, there was a lack of support and attempt to address issues. Some things we have addressed collectively and brought up with the organisation and people we were working with, other things we have addressed collectively in private, after hitting a dead-end with management. BME staff and/or migrants were left to deal with the racism on their own. In cases where it was more pronounced and virulent, as opposed to subtle, coping strategies included avoiding any non-work related conversation and not engaging with the service user beyond that, or using conversation to strategically move and distract away from the racism. 

Have you been involved with a union at work, was that an option at all? If so, what is your experience of the union?

MM: In the workplace where I was a volunteer worker, unionising and organising was not an option. We had no agency as workers, and we felt doing so would have endangered our status as migrants. Most of us had come from working-class backgrounds from countries in the Global South, the UK was a new environment which we were trying to navigate, whilst also coping with work-related problems. When it comes to the paid care workers, none of them were unionised, partly out of a feeling of desperation and abandonment, and partly because the low wages, worries about the ability to pay union fees, and worries about losing jobs when the contract itself does not guarantee work. I had the impression that a lot of my colleagues had little trust or hope in things changing. I joined Unite when I was working in Brighton. However, none of my other colleagues were unionised, but they have resorted to seeking legal advice from places like ACAS. For example, during the TUPE process, some of our staff, including myself, were suspended for reasons which remain unclear, which we have later found out to be against employment law, but could not challenge collectively. This was because of issues of conscience and the ethical side of the job. It was difficult to organise here as well partly due to the exploitative nature of working conditions (for regular and agency members of staff), as well as the fact that a lot of workers were also students and/or had caring responsibilities. Additionally, the impact on the mental health of workers would sometimes translate into struggling to engage with any work-related issues outside of working hours. I would also emphasise the ethical side of the job which generates feelings of resistance mixed with intense guilt and shame – as care workers who worked in people’s private homes, with teams that were often overworked, underpaid and short-staffed, we felt there was little room for organising as that would connect to a disruption of the service user’s life, and creating tensions in the workplaces between us and people we have close relationships with. This was also difficult because many of us, whilst assisting service users, have witnessed them criticise colleagues or advocate for them to be removed from the rota. We have also heard managers doing this. In fact, many of the concerns we had brought up about workplace problems to team leaders and managers were shared with some service users with our identities being revealed without our consent, in violation of our right to confidentiality. This has further entrenched a sense of fear and unease. 

How much power did you feel you had to improve your conditions, and how could that power have been increased?

MM: At the time, I felt that the power I had to change things was minimal, largely due to a feeling of despair, the immigration status and the mental health toll coping with workplace problems has had on me. I was frustrated with us as a workforce feeling unable to come together, but I also understood the valid fears a lot of staff members have had, including mine. This feeling of despair was also due to the fact that people I have raised issues within management have perpetrated exactly the same thing I was complaining about (this is mostly accurate for issues of racism and bullying). I feel that our power could have increased had we unionised and pushed forwards for our demands together, but I still think that remains difficult in the context of personal assistance when the service user is also the employer, and the workplace is their own home. For example, one thing to ponder on is the connectedness of inadequate pay with the funding that service users are in receipt of, the privatised nature of social care, and the state’s attitude towards social care and the people involved in it – one, which, in my opinion, is characterised by ambivalence. Covid-19 is highlighting a situation of care-workers being underpaid, routinely demeaned, and at the receiving end of two-pronged exploitative working conditions, whilst being referred to as ‘low-skilled’ or spoken of through militarised language such as ‘frontline workers’ and ‘heroes’ depending on convenience. What this does is blur the exploitative social relations at the core of care work and shift the narrative to one of self-sacrifice and angelic character traits.

Have you ever had conversations with your colleagues about unpaid caring responsibilities, and/or their relationship to your paid caring labour?

MM: Most of us had caring responsibilities, whether in the UK or in a different country. Since the workforce was entirely made of women, we have discussed this regularly. For staff who were BME, we have also discussed how these responsibilities were racialised and linked to perceptions of our backgrounds, in the workplace and in private, but these are not things we have discussed with others. Because of the gendered nature of personal assistance and care work, the job itself included carrying out unpaid caring duties, which we were not trained for. For example, a lot of our service users had complex physical needs in addition to mental health issues. Our training did not include the mental health aspect of care work, as it focused only on the physical side. I have repeatedly come across this difficulty in all the workplaces I worked at, a perception of care as being physical, rather than encompassing the mental health and socio-economic side of care. There is a disconnection between the training and the job itself, despite the claim of it being person-centred and person-specific, as the job tends to be a mixture of physical and mental health support. We were therefore left to navigate complex situations of mental health on our own, a situation which is dangerous to the service user but also impacts the mental health of workers themselves.

A lot of our service users and managers have also expressed gendered expectations of care workers by recognising the preference for women as they tend to do things ‘more thoroughly’ (not my own words!) I think there is a clear understanding, in the environment of people who have more power and are in senior positions (managers, directors), of the classed, raced, and gendered aspect of care work – and I think these are all things that are often utilised to keep us in our place and extract as much surplus value as possible. 

Do you have any thoughts on how care and care work should or could be changed? How could those changes be achieved?

MM: A complex question, where do I begin? I think it’s important here to stop and reflect on how issues of pay in care work do not stand in isolation from the undervaluation and underfunding of the social care sector. Every service user I have worked with was left to buy gloves, aprons, and sometimes masks out of their own expenses, when they already have severely limited funds. A lot of care workers still get a flat daily, or weekly rate, which when calculated per hour, amounts to less than the minimum wage. There is also a rampant perception of skilled work being tied to office jobs and formal qualifications. As care work provides person-specific training and requires no specific formal qualifications, it is seen as low-skilled. This is also exacerbated by the UK government’s attitude towards care workers and the points-based immigration system. As a care worker, I felt devalued in many ways, devalued through the pay (or lack of it thereof) I was getting, devalued through my inability to challenge work problems, devalued through everyday racism, devalued by reading countless articles on how I’m doing a job that British people will simply not do. Answering all these questions, and this one in particular, is difficult for the same reasons we have found it difficult to challenge work problems – how can we discuss issues at work when a concerned party is also subject to exploitative conditions and historical and current forms of oppression? As working-class people, as women, as migrants, as ethnic minorities, we are subject to exploitative working conditions under capitalism, largely perceived as a cheap source of labour, and a source for labour reproduction. People with disabilities are also subject to discrimination and exploitation under capitalism, as their oppression reflects the economic focus on profitability and profit-making, which in turn defines their ‘usefulness’ within an inherently ailing system and leads to their social exclusion. Disability exists for a variety of reasons, including, but not limited to, malnourishment, environmental factors, poverty, capitalism, and the failure of the state to provide adequate social care. Despite advances made in the provision of care as a form of personal assistance and independent living, rather than only institutional care, the sector is still subject to various power plays, and service users and care workers are paying the heavy price. Power plays include managers attempting to enforce practices in the workplace related to the personal choices of the service user, whilst simultaneously selling and capitalising on a brand of independent living, and ignoring the concerns and problems that care workers face.

How can care work be changed? First, a change in perceptions about the nature of the work and all the people involved in it. Care workers are not angels, warriors, or heroes, neither are service users. Care workers are underpaid and devalued, service users are also devalued through lack of funding and discrimination. I think these heroic societal portrayals of disabled people and care workers lead to ignoring the exploitative conditions of the job, the exploitation conditions of social care, and the rampant racism within the sector. A significant step would also be to address the disjunct between independent living as a practice, a philosophy, and a form of support, and independent living as a profit-making organisational brand. This is a serious discussion to be had as there is a difference between independent living, meaning care workers assisting the service user go to bed when they wanted, drink water at night, go to a concert if they wished, and between care workers being told by management that nothing could be done about racism and bullying because the job entails full independence. This practice not only discriminates against workers, but also against people at the receiving end of social care. Independent living needs to be challenged as a brand and promoted as a practice. Another change that needs to happen is the provision of mental health support for service users and care workers, as well as training for care workers on issues of mental health. I also think that divisions between personal assistants and care workers need to be rethought of, the former are perceived as more supportive of independence, whilst the latter are portrayed as less so and therefore demonised and deemed untrustworthy. This view ignores the exploitative working conditions of outsourced agency workers and people working in residential care homes, and portrays discrimination against disabled people as an issue between workers and service users, rather than an issue of care home and management power plays and funding cuts. A lot of the issues in the social care sector, including issues faced by workers and service users, can be solved through adequate funding that allows disabled people access to social care as needed and general wellbeing, and provides care workers with better wages and better working conditions; however, not all workplace issues can solved in this manner. I am still unsure about how racism, in the care work sector, can be challenged. Whilst the ethos of the job was the provision of independent living, this was not necessarily reflected in workplaces that did little to provide a healthy working environment, or adequate working conditions. The racism of the immigration system needs to be challenged. Unpaid volunteer workers worked the longest hours for the least pay. Paid workers of BME backgrounds were also given the longest shifts and the most demanding physical tasks, as opposed to the equal division of labour between workers. Service users should have access to more mental health support, more equipment, more wellbeing sessions, but so should care workers – care workers also need mental health support, better training that is not only person-centred on paper, and better pay. As workers, we need to have more room for unionisation to be able to advocate for our rights. Care workers don’t need claps, they need PPE, better pay, and better working conditions. Privatisation of an already crumbling social care system needs to end in favour of what the disability movement refers to as the social model of disability, a model which would provide care with respect, dignity, and independence, whilst allowing workers to advocate for their rights and challenge everyday problems. Anything less than this – anything that does not challenge the ramifications of capitalism on class, race, and gender in the sector or challenge the exclusion of disabled people –even if called independent living, ends up being an organisational brand, a means of profit-making. Care work requires a healthy working environment, a bond, and a relationship of trust between workers and service users, privatisation of the care sector leads to these specific aspects being instrumentalised against both and the sacrifice of rights in the workplace.